Josh and Sydney and the Cancer Monster

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Greg Raver-Lampman

It was 13-year-old Josh Harris who first uttered the word that nobody wanted to hear. When his little sister Sydney, just 7 at the time, started running fevers that doctors had not yet diagnosed, Josh told his mother, “Maybe Sydney has cancer.”

Josh, after all, was familiar with the “cancer monster.” He was three years into remission after his own grueling battle with Hodgkin’s lymphoma.

His words echoed what his mom, Leslie, feared most. If true, it would mean that two of her three children would be struck with cancer.

“It was in the back of my mind,” she admitted. “I thought, ‘Oh my God, don’t say it out loud.’ You don’t want to say it because you don’t want it to be true.”

But Josh’s premonition came to pass.

Sydney’s symptoms were eventually diagnosed as cancer by the pediatric cancer specialists at CHKD, the same ones who diagnosed Josh three years earlier.

Cancer among siblings is rare. In the history of CHKD’s cancer treatment program, five children diagnosed with cancer have had siblings diagnosed with cancer as well.

“It seems so unfair when cancer strikes two siblings, especially when they’re so young,” said CHKD oncologist Dr. William Owen. “It’s like lightning striking the same place twice.”

The first bolt struck the Harris family in February 2005.

Ken Harris, a jack-of-all-trades at Bay Electric in Newport News, and his wife, Leslie, were pursuing the American dream with their children, Josh, Sydney and the youngest, Patrick.

During a visit to a friend’s house to watch the Daytona 500, Ken mosied up behind Josh and casually rubbed his shoulder. He was alarmed to feel lumps near his son’s neck.

Leslie, who also felt the lumps, made an appointment the next day with a pediatrician. Chest X-rays revealed something that stunned Leslie – a large mass in Josh’s lungs.

The first to use the word “cancer” was Dr. Owen, who calmly explained that Josh had Hodgkin’s lymphoma, a treatable form of the disease. Both Leslie and Ken listened dumbstruck, the word “cancer” drowning out everything else.

Over the next days and weeks, Leslie became acclimated to a world of medical vocabulary, populated by doctors, nurses and cancer patients. In CHKD’s cancer center, she met other “cancer moms” whose children had been diagnosed months or years before. They offered solace and help in understanding the path ahead.

Pediatric oncologists in CHKD’s Cancer and Blood Disorders Center, a unit whose survival rate for Hodgkin’s lymphoma ranks among the nation’s best, put Josh on a treatment protocol that included multiple rounds of chemotherapy and ended with radiation therapy. His treatment ended in May 2005. He remains cancer free.

While the Harrises continued to return to CHKD and worried about recurrence, their lives returned to normal. They bought a new home in Yorktown. Leslie still met with the moms group, and the family participated in cancer fund-raising campaigns. Sydney even cut off her blonde ponytail to donate for wigs for young cancer patients.

Then, in September 2008, Sydney developed the first signs of illness. She began to feel weak and to run fevers. Leslie at first thought her daughter had a passing virus, nothing serious, but recurrent fever persisted. “Every evening, her temperature would go up to 102 degrees, like clockwork,” Leslie said. “Then her stomach started hurting all the time.” Doctors and specialists performed a number of tests but could not pinpoint the cause.

The thought that Sydney might have cancer had been percolating in Leslie’s mind. Even Sydney feared that her mysterious fevers might be a sign of cancer. Nobody, however, dared share their fears.

“If you don’t say it,” Sydney explained of her thoughts at the time, “it won’t be it.”

When Josh made his statement, everyone tried to ignore it.

But Sydney’s abdominal pains worsened, and doctors ordered a CT scan that revealed something horrifying – shadows in Sydney’s lungs. She was referred to CHKD, where a chest CT showed that her lungs were studded with tumors.

Driving home from work that day, anxiously awaiting a diagnosis, Ken got the call from Leslie, who told him what the doctors found – cancer.

“It about ripped my heart out when Josh was diagnosed, but this was twice as bad,” Ken said. “I just couldn’t believe that we could be hit twice. I pulled off to the side of the road and broke down.”

That night, Leslie posted an eerie group e-mail to her cancer moms support group with the message, “Prayers for Sydney.”

As it turned out, Sydney had an extraordinarily rare cancer, a hybrid of Hodgkin’s lymphoma, mixed with non-Hodgkin’s cells that included traces of Epstein-Barr virus.

“It’s the only time I’ve ever seen it, and I’ll probably never see another like it,” Dr. Owen said. “If you look at the literature, there have been only a handful of such cases, including adults.”

Dr. Owen consulted with colleagues around the nation to plan a treatment protocol for what they determined was a variant of non-Hodgkin’s lymphoma. Fortunately, the CHKD Cancer and Blood Disorders staff includes Dr. Eric Lowe, widely regarded as one of the nation’s leading experts in non-Hodgkin’s lymphoma.

The cancer was so rare it was impossible to gauge how Sydney might respond to treatment.

“There were no statistics,” Leslie recalls.

But Sydney did have one benefit: Josh was both an older brother and a survivor. He was her super supporter.

“Don’t be afraid,” Josh would tell her. “You can beat this.”

That, Leslie believed, helped Sydney through the toughest times.

“She knew her brother beat it, and she figured she would beat it, too,” Leslie said.

“Her resilience just astounds me,” Leslie said.

While some cancer patients write about their experiences at CHKD, Sydney expressed herself with pencils, paintbrushes and colored markers. In one drawing on a dry erase board in her room, she sketched Dr. Owen attacking a malicious looking germ. “The cancer monster,” Sydney explained.

Sydney Harris celebrated remission on her last day of chemotherapy in June 2009. Today, she is a third-grader trying to make up for lost time, taking art classes on the side.

While doctors remain vigilant as with all cancer patients, with checkups and tests to make sure there is no recurrence, according to Sydney’s latest scans, the monster is gone.